Cloudy with a chance of Autism

     I have been meaning to write for a while now, however, I just couldn't find the words.  April was a difficult month for me on this autism journey.  April is autism awareness month.  Honestly, I am glad that April has gone.  The past couple of years I have always been so excited for April to come.  It was our month to embrace autism, celebrate autism, and work hard to spread awareness.  I had different feelings this year.  I'm not sure why.  When I dig deep down I find my answer.  The answer that I hate to say out loud.  My son has autism, and some days are just so damn difficult.  His autism is not going away like I wish it would.  He is getting older, and his autistic stereotypical behaviors are not 'cute' anymore.  His behaviors cause people to stare.  I'm actually getting used to the stares now.  I took Gavin to the grocery store recently.  He was so overstimulated.  He ran all over the store, flapping, jumping, laughing, throwing everything he loves into the carriage, and even running away from me.  I kept my composure.  He was so happy.   I could see the stares.  I could feel them.  Then I thought to myself, keep staring people.  It's only then will you really see my beloved Gavin.  He is special and one of a kind.  He has autism and will teach you a few things.
     We had a very successful G-Man Foundation 5K race in April.  There is a lot of planning that goes on to help make this event successful.  Thank you to our race director, Kathy Marandola, for her hard work and dedication.  I would also like to thank all the volunteers, the runners, the walkers, and the sponsors.  Together we are working hard to make a difference.
     I think after the race is when I hit my low.  It was like this autism cloud stopped over me and stayed there for a while.  I cursed it many days and asked it to leave, however, it just wouldn't listen.  This autism cloud made me question myself.  It clogged my vision, and stopped me from writing.  It made me want to escape.  I really don't think I could put into words how I felt this past month.  I hid my tears and sadness.  I put a smile on my face and faced each new day.  Most days I wanted to cry my eyes out.  Cry over a life I thought I was going to have.  Cry for my days before autism.  Cry for a do over.  Cry, cry, cry!  Then I would begin to feel guilty.  Guilty that I even felt this way.
     When May 1st came, I felt a sense of relief.  I made it through a difficult month.  This is my life now.  A life of ups and downs.  A life of success and defeat.  A life with good months and bad months.  I am beginning to learn to accept the bad with the good.  The month of April brought many tears.  Goodbye April.  Hello May!  I'm working hard to get out of my autism funk and push myself to move forward on this journey.  I'm glad I find the strength to write and share my true feelings.  I often find that after I finish a new blog entry many people will say to me, "Wow, I had no idea that was how you were feeling."  Sometimes I will even receive an email from another autism parent who will write, "Thanks for putting into words exactly how I have felt."
     Lastly, I would like to take a minute to wish all moms a very happy Mother's Day!  I send an extra special wish to all the special moms out there.  The special moms who have special children, or who have faced the unimaginable and have lost their child.  Autism has taught me many things......Mother's Day is not about the gifts.  It's not about the fancy restaurants.  For me it's about celebrating my children.  I took some time out of my day and laughed with them, gave them an extra hug and kiss.  I also laced up my running shoes this morning and ran.  I ran well over three miles in complete silence.  I dedicated my silent run to all the moms out there who will never get to hear their child's voice again.  Who will never get to hug or kiss their child again.  My life completely changed when I became a mother.  Motherhood taught me what unconditional love is.  My life completely changed again when I became a mother of a child with autism.  Autism taught me to not take life for granted because in a blink of an eye everything can change.  I look at things differently now.  I appreciate different things.  I cry often, and I laugh.  I will continue to move forward even when autism makes me take a few steps back.   I will continue to try to be the best mom possible to all three of my boys.  I will continue to find the positive in autism even when my vision is clouded with the negatives.  Most of all, I vow to make a difference.

Looking forward to the autism sunshine,

Paula

Pictures of You, Pictures of Me

Dear Autism,

    I'm not sure where to even begin, or even what to say to you this year.  I guess some years will be like this.  I guess I will begin by saying, "Happy Autism Awareness Day!"  Today is your day.  The day once a year when we place blue lights in our windows.  We hang our autism wreath on our front door, and shine a blue floodlight on it.  Today is the day that we shine a light on you.
  
      Lately I find myself looking at Gavin's baby pictures.  I find myself staring at his eyes.  Looking for signs of you, Autism.  Wondering and asking were you there then?  Did I just not see you?  When did you first appear?  I often think of the song, Pictures of you.  Pictures of you, pictures of me, hung upon your wall for the world to see.  Pictures of you, pictures of me, remind us all of what we used to be.  I guess you could say we used to be a family without autism.  And now?  Well, I guess it depends on the day of the week, the moment in time.  We have our good days, and our bad days.  We have our days where because of you we have to divide and conquer.  Days where we do things separately instead of as a family.  Days that we are victorious, days that we are defeated.  Days that we laugh and smile because of you.  Days that we curse and despise you.  Some days we would like to trade you in, most days we learn a lot from you.

     Before I went to sleep last night I sat and watched you.  I watched you breathing, I watched you dreaming.  I wondered what you were thinking.  I wondered how you were feeling.  Autism, you looked so beautiful, so innocent.  I hugged and kissed you, and made a promise to you.  I promised to keep fighting for you, I promised to keep spreading awareness.  I promised to support you and no matter what welcome you, even on my bad days.  I promised to shed more tears of joy, then tears of sorrow.  I promised to continue to love you unconditionally.

     Today is your day, Autism.  Today we will spend some time as a family and reflect on what we love about you!  We will share our special memories we have of you.  We will talk about our future with you.  We will shine a light on you!  Pictures of you, pictures of me hung upon your wall for the world to see.  Pictures of you, pictures of me, remind us all of what we could have been, what we could have been.................Happy Autism Awareness Day!

All my love,
Paula

Carry On

     I can't believe it is already March, and that Gavin will be graduating from the Pre-K CSA (Classroom for Students with Autism) at the Pawtucketville Memorial Elementary School.  It feels like just yesterday I applied for a transfer to teach at P'Ville so that I could be close to him and be involved in his educational experience and growth.  Gavin will be moving on to a K-2 CSA Program.  We are not sure which school he will be assigned to as of yet.  To say that I don't have anxiety in regards to him moving on would be a lie.  I am anxiety ridden.  Anxiety about him being at a different school, anxiety in regards to his progress.  Anxiety about his transition.
     With March comes kindergarten registration.  The time of year when 4 (soon to be 5) and 5 year old children tour schools with their parents.  The time of year when parents register their babies for kindergarten.  Lately, I have been really sad thinking that I will never get to experience some of the same traditional things with Gavin that I got to experience with his two older brothers.  Last week I saw a family touring our school with their child in hand.  And of course I thought, "how come?"  How come Gavin?  As I was thinking this, a third grader walked past me and said, "Hi Gavin's mom!"   I smiled, said hello, and thought, "That is right, I am Gavin's mom".  My heart then smiled as I thought of how far Gavin has come.
     Running continues to help clear my mind, however, sometimes it also makes me think long and hard  about life's lessons.  During a run last week I was thinking about autism speaking to me.  I then realized that autism speaks to me each and every day.  This is what I sometimes hear............

Dear Paula,
           I entered your life June 29, 2008, however, we weren't formally introduced until almost two years later.  I saw how you looked at me that first year.  I saw your raw emotions, your fear, your guilt, your sadness, your grief.  I witnessed first hand your determination.  Determination to get to know me better, determination to unlock you boy's mind and teach him how to speak.  You won that battle.  Matter of fact, there are many battles that you and I have had.  Some you have won, some you have lost.  I have noticed that over the last two years our relationship has changed.  You have learned not to battle with me anymore.  At times, I do still see your fear, your guilt, your sadness, your grief.  However, I don't see those times as frequently as I used to.  Instead, I see you carry on.  Carry on with unconditional love, acceptance, devotion, and determination.  At times, you despised me.  That look has also faded.  You see, Paula, what you don't realize yet is that you have won the lottery.  The lottery you have won doesn't consist of money.  It consists of priceless life lessons that you will continue to learn from me.  You won the lottery that day in June when Gavin came into your world.  Your chances of winning were 1 in 88, and your boy was that 1.   When your feelings of sadness creep up on you, then take a step back and remember to celebrate.  Celebrate your win. You and I will continue to have long talks as to how to keep unlocking your Gavin's mind.    Continue to look at me with your heart, for your love sees more clearly.  Lastly, continue to carry on.

Your friend,
Autism

     I have come to realize that, yes, I may not get to experience the same things with Gavin as I did with his two older brothers.  Instead I get different experiences, and in my heart different doesn't mean less.  I am learning to take a step back and celebrate my winnings.  Some days are easier then others, but for now I will carry on.

Carrying on,

Paula

    

Picture Perfect

     This morning I walked past Phil while he was reading the Boston Herald.  I happened to catch a quick glimpse of a headline written on the page of the open paper.  It read, "Gi and Tom's baby is picture-perfect."  Something about this headline and article really got to me.  This may sound awful but I am going to be honest and write what I thought.  I fast forwarded this little girl's life by two years.  I thought about what if.  What if she receives an autism diagnosis.  Would the headline read the same?  Would the media still think of this precious child as picture perfect?  My first thought, probably not.  So, what makes a child picture-perfect?  I guess this depends on who you ask.  I guess "picture perfect" is different for everyone.
     Gavin is now beginning to be able to carry on simple conversations.  Something I thought that he would never be able to do.  He is able to answer basic questions about his day.  He doesn't do this consistently, however, this is a huge accomplishment for him.  The understanding of language is such a struggle for him.  I honestly thought my son would never talk.  So, for him to be able to tell me little things about his day is a dream come true.  The other day our school principal, Mr. Stahl, read a story to Gavin's class.  I asked Gavin if Mr. Stahl came to his class and read.  He answered, "yes,"  I then asked him what story did Mr. Stahl read.  He replied, "Jacket in the Snow."  A small conversation that was picture perfect to me.

     I have started to do our own ABA (Applied Behavior Analysis) sessions with Gavin at home.  Gavin's teacher, Lynne, made me visuals and gave me guidance as to how to go about implementing and conducting the sessions.  Lots of visuals were needed.  The ABA sessions focus on getting Gavin to complete homework.  When we first started with our ABA sessions it was pure hell.  Gavin spent the majority of the time yelling, throwing things, and being non-compliant.  He would bite himself and pull his hair.  With lots of patience, visuals, reinforcements and consistency, Gavin has made leaps and bounds.  Even my mother commented a couple of weeks ago about how great he is doing.  He looks like a completely different child then when we first began the sessions.  The best part is that Gavin now independently gets his homework folder and the visuals.  He will bring them over to me consistently each night after dinner and say, "Mama, it's Gavin's homework time."  Watching this growth in him is picture perfect to me.
     I found myself sitting on my bed staring into space this week.  I guess you could say I was daydreaming.  When my eyes came back into focus I noticed that I was staring at my special rosary beads.  I call these rosary beads, "Aunt Claire's Rosary Beads."  My sister had them made for me after our aunt Claire had passed.  The beads are made from roses that were at Aunt Claire's wake and funeral.  Aunt Claire's Rosary Beads are very special me.  Not only do they represent my special aunt, these beads have been used to get me through my dark days of autism.  The dark days of autism consist of days that are filled with sadness.  Days of crying and feelings of defeat.  Days when I fall asleep crying, and wake in the middle of the night, reach down, and feel the beads still beside me.  Honestly, these beads got me through.  They were something to hold when I felt sad and defeated.  These beads brought me sunshine and hope.  When I am having a bad day I now find myself reaching for Aunt Claire's Rosary Beads.  I now refer to them as my miracle beads.  I have a friend who is currently going through a dark time in her life.  I have been thinking of loaning her the beads in hope that they bring her the same comfort that I received from them.
     Staring at Aunt Claire's Rosary Beads got me thinking about the autism parents that don't have anything to get them through the bad days.  I think we all need something.  Something to give us hope and sunshine.  Something to bring us out of the darkness and be able to see the rainbows.  Something else I though of this week is all the progress Gavin has made.  My colleagues and principal, Mr. Stahl, have all commented recently how far Gavin has come.  How they are noticing his progress.  It made me think back to the early autism days.  The days that Gavin was receiving intensive early intervention.  The days when I wondered if he would ever talk.  The days where he couldn't make eye contact.  The days when he used pictures to communicate instead of words.  The days when I was first introduced to autism.  Autism has taught me to not look too far ahead.  It has taught me to watch for the obstacles and plan how to defeat them.  It has taught me to always look in my rear view mirror.  For when you look in  that mirror you get a glimpse of how far you have come.
     Lastly, everyone has a different view of picture perfect.  Here is what picture perfect looks to me: Picture perfect flaps and stims.  Picture perfect is rigid.  Picture picture needs routine and structure.  It needs visuals to learn.  Picture perfect makes you smile when least expected.  Picture perfect amazes you when something new is learned.  Picture perfect works harder then anyone else I know.  Picture perfect struggles with making eye contact.  Picture perfect also has meltdowns when he can't express his wants or needs.  Picture perfect loves sensory input.  Picture perfect struggles with self regulation.  Picture perfect loves unconditionally and accepts everyone for who they are.  My picture perfect has autism.  He is 1 in 88, and he is picture perfect to me.

Mother of a picture perfect boy,
Paula





  

Boogies with Milk and Cookies

     We survived the holidays!  Phew! Overall it was a difficult Thanksgiving.  I ran out of steam around Thanksgiving.   I was tired of being on this autism journey.  The week of Thanksgiving I clocked 15 miles with my running sneakers.  I realize now that running was helping me to escape.  Escape from the autism meltdowns, escape from the stimming, escape from visuals, escape from autism.  I wasn't really thankful on Thanksgiving.  Instead, I continuously asked, "why?".  I questioned my parenting skills, I questioned my stamina, I questioned and cursed.  I also cried a lot.  As I often tell my coworkers, "Crying cleanses the soul."  Something I learned a long time ago from an amazing principal that I had the opportunity to spend 12 years of my teaching career with.  Thank you, Ray Sierpina, for teaching me that tears help to cleanse.
     I was hesitant to decorate for the holidays.  I was dreading how the physical change in the house would affect Gavin.  I can now say that he adjusted better than expected.  He loved the Christmas tree and all the lights.  He was the one turning the tree on each morning and evening.  However, he also loved playing with any and all Christmas decorations.  He broke quite a few decorations and ornaments.  I realize now that I probably should have 'autism proofed' the house during the holiday season.
     The weeks leading up to Christmas were up and down.  We got on our autism roller coaster again.  Some days were just down right difficult.  The difficult days I refer to as the days of darkness.  Days where Gavin struggled telling us what he needed or wanted.  Days where he couldn't self regulate.  Days where he would hit me, attempt to bite me, throw things, and scream.  Then there were days that I refer to as our rainbow days.  Days that Gavin was calm and was able to self regulate.  Days that Gavin socialized with his brothers.  Days that Gavin would say something that would make you smile.  Days that he would grab a guitar, strum it, and sing Jingle Bells.  I would remind myself to remember the rainbow days when we are having our days of darkness.  In order to see the rainbow you need to go through the darkness.
     Gavin continues to make great progress at school.  We had an IEP meeting.  His IEP will be amended, and, he will attend the regular Pre-K class for an hour per day.  Basically, he will be with typically developing peers for an hour a day.  Something I thought would never happen.  Great news.  His teacher, Lynne, and I have noticed a huge burst of language lately.  When asked what he wanted for Christmas, he was able to tell us, trucks and dinosaurs.  Gavin's new obsessions:  trucks, Jurassic Park, and the Beatles.  He loves the song, "Baby you can drive my car."  He likes to have it on repeat play over and over again. He also loves to play it very loudly.  I think it is his way of letting me know that he is the one in the driver's seat, not mama.  The day before school vacation we had an all school assembly.  The entire school was in the gym singing Christmas songs, and many parents were there also.  After the songs, our principal, Mr. Stahl, announced over the microphone and in front of the entire school, the students who were nominated by their teachers for "We Try Our Best."  The students who were nominated received a certificate.  It is along the lines of student of the month.  Once the students' names were called they had to walk across the gym and receive their certificate.  I was ecstatic, surprised, amazed, and emotional when I heard, Mr. Stahl, say  "Gavin Peters."  All my students started cheering for Gavin. It was so difficult to hold back my tears.  I had no idea that he had been nominated.  Lynne prepared him so that he would  walk across the gym and receive his certificate.  Which he did without holding her hand.  That was a rainbow day for us.
     We tried to keep Christmas as low key as possible for Gavin.  Christmas Eve consisted of our family ritual.  Reading, The Night Before Christmas, and leaving cookies and milk for Santa and carrots for Rudolph.  Gavin wanted to leave apples for Santa.  He also wanted to leave Santa some boogies.  As we were putting everything on a plate, I looked over and noticed Gavin picking his nose.  Well,  once you call attention to negative behavior you might as well as raise the white flag.
     Gavin woke at 4 am Christmas morning.  He didn't ask to open presents.  He didn't ask if Santa had come.  This is what he does often.  Wakes and does not go back to sleep.  I remember when we first got the autism diagnosis, a lot of people asked me if he slept.  I then learned that many children on the autism spectrum have difficulty sleeping and have awful sleeping patterns.  Gavin sleeps great some of the time, other times I am running on pure exhaustion from his out of sync sleeping pattern.
     Both Gavin and I ended up with the stomach virus during the week.  The virus for him lasted a couple of days.  The worst part was that he couldn't tell me that he didn't feel good.  I did notice the past couple of days that he is flapping and jumping a lot.  I'm guessing it's due to his body fighting this awful virus. He becomes traumatized when he vomits.  It is heartbreaking to watch.  He usually yells, cries, and flaps.  We have been trying to teach him that he needs to vomit in the toilet.  I have spent days cleaning up vomit because he will be running around like he is fine one minute, then the next minute he is vomiting all over the place.  Gavin woke around midnight this morning.  He was yelling, "no! no!" in his sleep.  My gut was telling me to get him to the bathroom.  He began crying and flapping.  The next thing I knew he was vomiting all over the bathroom. I called for Phil to come help.  We managed to reassure him that he was ok, and hold his head over the toilet.  After cleaning up the bathroom I glanced at the time.  12:10 am.  It was a new year.  Many people were out celebrating.  Many were toasting with champagne.  Many people were embracing their loved ones.  I looked over at Phil and gave him a high five.  A high five for helping me teach our boy to vomit in a toilet.  A high five that we made it another year on this autism journey.
      Before I fell back to sleep I thought of how this wasn't the path I would have chosen.  I thought how I often see pictures of families on facebook and am jealous that all their children are typically developing children.  I thought about how many families don't have to over plan holidays, don't have to worry about the fact of decorating their house for Christmas may throw 'off' their autistic child.  I thought about my younger years before children. How I had my whole life planned out.  I thought about champagne, new year's resolutions, celebrations, and midnight embraces.  Then I thought about how much progress my boy has made.  How much hard work has gone into his progress.  I thought about boogies with milk and cookies.  I may not have chosen this path, but there is a reason I was placed on it. I will never give up hope.  I am slowly finding that key.  This path has led me to bigger and greater things.  It reminds me often that life isn't perfect.  It reminds that you have to walk through the darkness in order to see the rainbow.


Enjoying the boogies with the milk and cookies,

Paula

  

          
   
   
     
           

Faith, Hope, Love, and Inspiration

     I started a new blog entry a few weeks back.  I was slowly adding and saving updates about Gavin and our journey with autism.  Today, I went ahead and deleted that entry.  I have decided that this entry is going to be entirely different.  This entry will be written about what I do 365 days of the year.  No, I am not talking about being a mother of a special needs child.  I am writing about being a special needs teacher.
     I remember the day so clearly.  I was a senior in high school.  I was about to turn 18 years old.  I had to decide what I wanted to do with the rest of my life.  I remember the day I wrote it down, Special Education Teacher.  I closed my eyes and dreamed about teaching in a small town.  My dreams consisted of teaching students with learning disabilities.  Students that needed a little bit of extra support academically to help them absorb the curriculum.  Never in my wildest dreams did I ever dream or think about teaching "those" kids.  "Those" kids being students with an emotional disability.  I remember graduating from college and being offered my first teaching job in a public school system.  I actually had two job offers on the table.  One being in a high school resource room, the other being a teacher of  "those" kids.  That job offer came 19 years ago.  19 years ago I chose to be a teacher of  "those" kids.  The kids who have an emotional disability.    "Those" kids are now considered "my" kids.
     Some of my kids have bipolar disorder, schizophrenia, fetal alcohol syndrome, oppositional defiant disorder, obsessive compulsive disorder, mood disorder, and post traumatic stress disorder.  Some of my kids have witnessed domestic violence and have experienced unspeakable trauma.  I have experienced manic episodes, physically aggressive cycles, and watched them relive trauma.  I have been spit at, kicked, punched, bruised, and bitten.  I have had my hair pulled and been beaten with a shoe.  I have had visits to the emergency room as well as multiple sessions of physical therapy due to injuries from some of my kids.  Some of my kids have verbally threatened to bring a knife to school and stab me.  Some of my kids have told me that they hate me and wanted to bring a gun to school to shoot me.  Some of my kids have threatened to take their own life. Some would say that some of my kids suffer from a form of mental illness.
What do I say?  I say that my kids struggle with making friends.  My kids struggle with expressing their anger and frustration.  I say that my kids are often misunderstood.  I say that my kids are great kids.  They are kids that need a teacher to believe in them.  They are kids that need a system that doesn't fail them.  They are kids that I will fight for.  They are kids that I will work overtime to get them to appropriately express their anger.  They are kids that are always on my mind.   They are my kids!
     I spent most of the day yesterday glued to the television.  Watching the news coverage about the unspeakable tragedy that happened in Newtown, CT.  I cried thinking of all those innocent children.  I cried hearing about the teachers and staff that died protecting their students.  I, like everyone else, wanted answers.  Why did this happen?  How could this happen?  Some people blame it on the gun laws.  Some people blame it on mental illness.  We are always looking to blame someone or something.  What happened in Newtown could happen anywhere.  We, as a society, need to change.  We need to believe in each child.  We need to help the system so that it doesn't fail our children.  We need to show kindness and love.  We need to work together to rid this world of violence.  We need to make this world a safe, loving, and accepting place.
     Tomorrow I will go to school.  I will greet each of my special kids with a smile.  Some will smile back, some will come in angry, some will not make eye contact, some will come in exhausted, some will greet me with a hug.  No matter how they look, no matter how they act, no matter what they say, no matter what they do, I will be thinking of four words.  Faith, hope, love, and inspiration.  I have faith in my students, I have hope for their future, I will show them love, and most of all they inspire me.  Inspire me to work harder for them, inspire me to believe in them, inspire me to fight harder for them. 19 years ago I welcomed "those" kids into my life. "Those" kids changed my life.  They are my teacher.

With faith, hope, love, and inspiration,

Paula Peters
Adjustment Teacher  
   
     
   
     

A letter to my firstborn on his birthday

Dear William,

     12 years ago today at 3:27 p.m., I became a mother.  12 years ago today I began an incredible journey of motherhood.  It feels like 12 years have gone by in a blink of an eye.  I remember when you were placed in my arms for the first time.  The sight of you took my breath away.  I remember the first time you smiled.  I remember your first word, your first step, your first day of kindergarten.  I remember the day you became a big brother.  I experienced so many "motherhood firsts" with you.

     I notice what a kind hearted young man you are growing into.  I am so incredibly proud of you.  I often find myself stopping what I am doing to watch you interact with your baby brother.  You make him laugh and you teach him about unconditional love.  I appreciate your honesty, and hope that you will always be willing to tell me how you feel and what you are thinking.  I know that there are days that you despise autism being in your life.  I know there are some days that you wish things could be different.  William, some days I have the same wish.  I know in my heart that autism is helping to shape you into a better person.  You can now pick autism out in a crowd.  You are leading a road to acceptance and understanding.  You recognize special needs in different people.  You acknowledge that it is ok to be different.  I love how you have nicknames for your little brothers, and I love how they look at you with such love in their hearts.  

     I dream about your future.  I dream about where you will go to high school, which college you will attend.  I dream about which career path you will take.  I dream about the day you become a father.  I hope and pray that life will be kind to you.   Thanks for loving your brothers.  Thank you for guiding them, having patience, and being a great role model.  Thank you for choosing me to be your mom.  Happy birthday to my firstborn son.  I love you.

Love,

Mom  xoxo